What Can We Ask Of Others?

A friend on Facebook posted this poem today. Often, people post poems or affirmations and they strike me as too sentimental, too Pollyanna-ish or, in some other way, they simply don't 'speak' to my soul. This one was different though and it had a powerful impact.

I'm guessing, without doing any research, that it was written in response to the death of a loved one. However, I was immediately struck by how it applied to chronic illness and to what I have previously written about grief and acceptance.

I truly wish I had known these words when things were really bad for me. When I couldn't get out of bed for months on end and when I couldn't articulate what I needed from others.

Perhaps those who are still facing those struggles will find a use for this poem and can use it to let others know what they really need. Or, perhaps it will simply be a source of personal comfort for them. Either way, it feels worth sharing.

Please Be Gentle

Please be gentle with me for I am grieving.

The sea I swim in is a lonely one

and the shore seems miles away.

Waves of despair numb my soul

as I struggle through each day.

My heart is heavy with sorrow.

I want to shout and scream

and repeatedly ask “why.”

At time, my grief overwhelms me

and I weep bitterly,

so great is my loss.

Please don’t turn away

Or tell me to move on with my life.

I must embrace my pain

before I can begin to heal.

Companion me through tears

And sit with me in loving silence.

Honor where I am in my journey

Not where you think I should be.

Listen patiently to my story.

I may need to tell it over and over again.

It’s how I begin to grasp the enormity of my loss.

Nurture me through weeks and months ahead.

Forgive me when I seem distant and inconsolable.

A small flame still burns within my heart

And shared memories may trigger

both laughter and tears.

I need your support and understanding.

There is no right or wrong way to grieve.

I must find my own path.

Please, will you walk beside me?

By Jill B. Englar

My Story - Published at Becoming Visible 4 ME

I was honoured to be asked to tell my story for publication on the Becoming Visible 4 ME website. This has 'gone live' today and you can find the article HERE.

After some deliberation, I decided to tell my story from a personal point of view rather than by focusing upon a male perspective of chronic illness. Mine is the first story published on the site by a male but I wanted to try to demonstrate that we are just the same as women when it comes to dealing with such massive life changes. The emotional aspects, rather than the physical ones, have primarily been the focus of my blogging and I wanted to stay true to that.

My story was written prior to moving to my new apartment so it is already somewhat out of date. However, it does capture that post-acceptance period of my life where I finally moved forward and decided I must carve out a life alongside my condition.

The site is the brainchild of Dominique, whom many of you may know from the ME online community. The aim of the site is to tell people's stories, one at a time (monthly) in the hope that the stories are shared and a wider knowledge of what living with ME is like can be provided. Dominique is a formidable woman who has herself battled serious illness and who continues to be a driving force within the community with her website and various other projects. I am deeply grateful to now be able to also call her a friend. Please share the great work she is doing by posting the link on Facebook etc.

Take care,
Barry

Life - Finding Meaning and Maintaining Ethics

The title of this post is rather wordy but it reflects what is occupying my mind most of late. I was reflecting on the fact that, this month one year ago, I was submitting my essays and sitting exams in the first year of my Social Work degree. I was very happy with the marks I attained, even though I was really struggling to function towards the end of my writing and during most of the exams. One of the essays I scored highest on was a piece I wrote on Values and Ethics. A subject that I initially found frustrating but that I gradually grew to be fascinated with. As it links in to what I want to write about today, I have posted a copy of the essay for download HERE.

The essay is very focused upon a social work perspective and that, combined with an exploration of the ethical models of Aristotle or Kant might not be of interest to many people. I wanted to provide context in addition to what I'm writing now though and it is another indication of how different my focus was only one year ago. And yet, how I'm almost wrestling with the reality this very day.

I appreciate this might all seem confusing and opaque so far. My apologies. I mentioned in a previous post that I felt I was standing at a cross-roads in respect of so many things lately. Decisions I make and actions I take will change my path. Returning to values and ethics, I guess 'consequential-ism' is a good word for what I mean. Everything I think and do has a consequence and leads me somewhere (and also leads me farther away from places/people).

The support of the physiotherapist and occupational therapist had given me a boost. A very welcome one. It also creates consequences. My initial enthusiasm about the delivery of the elbow crutches created a faulty sense of what my life would be like from this week onwards. I would be out and about with my crutches, no longer housebound. Well - no. In reality, I still cannot stay standing up for longer than a few minutes. Crutches aren't going to fix that.

I also fear I might become a measure of success for the therapists. Will they be judged on whether they can make me 'better'? Already, one of the therapists has suggested CBT and normalising my sleep and waking hours and activities. Unfortunately, it isn't so simple. I must sleep when I cease functioning (or at least rest by staring into space and laying flat) and that cannot be dictated by a clock. So, dilemma number 1: Am I helping or hindering myself by engaging with a Rehab team? Am I being defeatist and negative by not trying to fit in with 'normality' in terms of rest periods and activity etc?

And now we return to values and ethics (it is all linked, I promise!). What the hell am I to do with my life? This question keeps coming back into my mind again and again. I am struck by there being some wisdom in stopping focusing so much on illness. Yes, I am unwell and, yes, my abilities are much decreased. But is focusing on this so much 'healthy'? Is surrounding myself with others who are focused on their illnesses too 'healthy'? Then there is the opposite side of the argument. The wrestling with ethics. Now I've become aware of the suffering that goes on amongst people I've become close to, now that I've been given glimpses of their everyday struggles, how can I ethically say that I should spend less time focused upon illness? Shouldn't I ethically be spending whatever energy I have in trying to find ways to make a difference in people's lives? So, dilemma number 2: Should I focus less on my own illness and/or the illnesses of others or should I devote more of myself to helping others?

These things are best in threes, apparently, so I'll also mention the next thing I'm toiling with. How do I find a balance between acceptance and trying to get better? I strongly sense (and others have suggested it to me) that acceptance is something I am struggling with. For me, acceptance means giving up and consigning myself to being ill forever. My instinct is to keep researching, keep trying new treatment ideas and keep aiming to protect what function I currently have. Again, there are consequences to this. Life is passing me by. What if I just accepted this is what I'm currently like and tried to carve out some sort of life for myself to work alongside my limitations? So, dilemma number 3: How can I make peace with my current lack of health and still retain a desire to get better?

If you have reached this point, I applaud you. This will not be regarded as one of my more coherent posts. If I have confused you, I apologise. Confusion reigns supreme for me right now and perhaps putting all this 'out there' will bring some form of clarity or elicit some form of sage advice. Worth a try!

New Path Awaits

So much to digest since my last update.

Let's begin with the previous post. In it, I very bluntly talked about the future and the fact that suicide was always one of the options on the table. Mostly, this was understood but I feel the need to clarify that I was NOT suicidal. I don't intend to take my own life tomorrow, next week or next month. It's simply the case that it must be kept in mind along with the possibility that I might be permanently unable to take part in life to any great degree. I know there are some people who love me who worry when they see me mention such subjects but I have always taken the view that this blog should be full of raw honesty and I have to maintain that decision. I will, from time to time, talk about subjects that are taboo within society or that unsettle others. That's just the way it is.

My last update also elicited a very interesting conversation with a friend. Let's call her April (not her real name). April was one of those I probably classed in the broad category of 'healthy friends' and my last post expressed how I felt like I didn't exist anymore. April got in touch and was quite angry about the assumptions I was making on the subject. What initially began as two very opposing views gradually turned into a very useful discussion that made me think a lot about my present reality and my future. It turns out that April has been suffering from Rheumatoid Arthritis since October last year, a condition just as incurable as M.E. and every bit as disabling (and probably much more painful). April has also had to adapt to a life where a lot of her independence is lost and she is battling very unpleasant symptoms with an illness that is regarded as chronic.

April takes a very different approach to the one I have taken. She doesn't make her condition public on places like Facebook for example. I, by contrast, have surrounded myself with Facebook friends who are also chronically ill as I need to feel understood, believed and supported. After reflecting for a while on our different approaches, I can see positive and negatives in both. The subject is way too long to get into right now but I will be writing about it in due course as it fits in with some very important decisions I've been making lately.

Returning to the present, today I was visited by my existing Occupational Therapist and an OT and Physiotherapist from the Rehab team at the local council. My existing OT was delivering my new bath chair and the Rehab team were here to talk about how I can have a decent level of independence and keep my muscles from wasting away without risking crashes/relapses.

The bath chair was a shock. Such equipment is very clinical looking and is designed with the elderly in mind more often than not. It therefore is quite difficult to psychologically adjust myself to needing it. It looks very like a stair-lift and operates the same way so it's hard not to imagine one of those TV adverts with the old dear travelling up the stairs with her cup of tea in her lap. However, I tried it out and there is no doubting it will be useful and will allow me to use much less energy when bathing.

The rehab team were focused upon more physical aspects and we have agreed a low-level exercise plan to try for a couple of weeks and see what the after-effects are. I'll probably keep an 'activity diary' so I can measure how much I can do without 'crashing'. I'm also going to get elbow crutches to try as they may allow me to be on my feet a bit more without being in danger of falling over! They also told me about a Community Car service that sounds wonderful. I would pay for it in much the same way as a taxi, and would have to book the service a few days in advance, but the driver and vehicle would be a lot more disability friendly and could allow me to have some independence in terms of GP and hospital appointments etc.

All of this has really lifted my spirits. I am delighted with how helpful and compassionate the therapists have been and I really feel like I have people on my side. I also feel like I have aspirational goals in terms of independence and getting some sort of quality of life back. It feels good to entertain the possibility of escaping these four walls.

A few days ago, I had been at a cross-roads and had made a decision that it would be worth having temporarily increased symptoms if it meant I had some sort of life experience again. So, the support from the therapists are going to fit very nicely with that decision. It might be that my abilities remain pathetically low for a long time to come but it seems important to try and check where my boundaries are and how much I can do. Even having one day of 'activity' each week would be much better than the current situation where I am almost living in bed.

So, a new path awaits. One that will be difficult and will contain setbacks but one that has great potential and that I want to try. I still have to work out a lot of stuff in terms of what I want from my life, healthy or ill, but that can be a work in progress. For now, it just feels important to have a little hope for the future. There are also a couple of 'treatment' options I am considering but I will get into those another time as this post is already way too long!

A Year of Illness

*warning - extreme honesty in this post, including exploration of suicide etc - do not read if easily offended/upset by the subject*

I've put off writing this post for so long.

Last month saw me reach the depressing milestone of being ill for 1 year. Now, before I go on, I should state that I know people who have been ill for 30+ years and I know people who have been ill since childhood and have never been able to take part in life much at all. In no way do I compare my situation to theirs. I'm new to all this in relative terms and I luckily still have pretty good cognitive functions and have memories of good times to keep me company in the endless days of nothingness.

However, I cannot ignore the fact that 1 year of illness feels very different to 11 months. Even if the reality is not much different. I guess it's kinda like the psychology of how an item is priced at 9,99 rather than 10.00. I always thought this would be temporary. Sure, I knew there was a possibility that I'd be sick for a long time but I don't think I really had that mindset. I was going to do everything I could to get better and then get back on with my degree and my future. I was going to go back to having holidays and spending time with my precious nephew and all the stuff I thought were just temporarily on hold. Now, a year later, it all feels like a distant life led by someone who isn't even me.

And it hurts. It hurts so fucking much. On days where I'm clear-headed and aware, I have philosophical debates with myself about suicide. Nobody knows what the future holds (which is just as well, really!) and I might be well again one day soon. I might be relatively functional again in the near future even if I don't recover. Or, I might be like this forever. So, I choose to retain control over this part of my life. The part about when and how my life ends. It's a controversial subject and I respect that but this is MY life and it will be MY choice.

I have explored two options. One being the Dignitas route and one being the 'do it yourself' helium method as used in the early days of Dr Kevorkian's work. Talking about this subject openly is impossible without having to soothe or reassure others who care about you, of course. So, I should clarify a few things. This is calm, rational and pragmatic and is based upon the possibility of me reaching my limit AT SOME POINT in the future. This isn't something I'm planning for next week. Also, this isn't something I'd even consider when I'm at my lowest. People can believe me or not but this isn't depression talking. I promise all those who might worry about me discussing this that I will not be doing anything drastic or rushed. If it reaches the point where enough is enough, it will be planned and everything will be put in order. But I retain my right to decide.

To any of my non-ill friends who still read what I write, I'm keen to know why you no longer have anything to say to me. Did I stop being fun when I got ill? Do you not believe i'm really ill? Are you bored of me talking about illness? Is it easier to avoid the whole subject and just ignore it/me? I doubt I'll get a response to this but I'm curious. Because I feel like I don't fucking exist anymore.

And so, what was originally going to be a reflective piece about the year of illness and all my learnings has turned into a rather different beast. I make no apologies for allowing my uncensored anger and despair to have a voice today but I appreciate anyone who has the love, curiosity or fortitude to 'listen'.

This is Now

I replied to a message on Facebook and thought it might be useful to put most of that reply 'out there' for anyone who is interested to read as I know my absence from the online world has worried some people.

I think, coming up to the first anniversary of having to lead such a restricted life, I'm finally experiencing the grief of the situation. I think I'm finally allowing myself to be sad, angry and despondent about what my life has become.

That perhaps sounds a little glum but I think it's a stage of the process I missed out originally and it has to be experienced. Does that make sense?

I threw myself into research, into the chronically ill communities, into establishing a strict regime for myself. Everyone remarked how well I was coping and how 'smart' I was at picking up the best approach so quickly. Perhaps that is so but I failed in giving myself time to just reflect and accept and pout and rage. It was all based on logic for me, never emotion.

It's hard to explain to people but I think this is healthy (although it can be mistaken for wallowing or depression). I don't currently have the capacity for any research, community work or the suffering of the world and its population because, temporarily, I am consumed with my own suffering and it's all I can handle.

I have no doubt that I'll be back when the time is right. That I'll be back to being a hive of activity and aiming to support those who are in darkness via my research, my little projects or simply my friendship and compassion. I don't yet know when that time will come but it will come, I'm sure.

So, for now, I don't take in the news from around the world. I'm aware of things (as it's unavoidable) and my heart aches for the suffering caused by what seems like a torrent of natural disasters lately. It also aches for those who are caught in the trap of chronic illness and those who are still having to fight for justice, acceptance and being treated with decency.

As for getting better, my pragmatic approach has mainly been to stop myself getting worse. To avoid doing anything that will cause damage that is more difficult to repair once we understand more about our illnesses. So, I take my billions of supplements and rest, rest, rest. I do not push. I think the 'holding pattern' analogy is completely apt and it's probably the best we have right now.

To those who extend their love and care towards me through messages, pokes or simply thoughts, please know I do appreciate them and I am aware of them. I would hate for my silence to be confused with apathy.

Take care everyone. See you all soon.

Licking The Wounds

Sometimes it's necessary to retreat. To lick our wounds and admit we are fragile.

Lately, I have had to do just that. I had a birthday at the beginning of the month and have gone downhill markedly since then. I am confined to bed much more than I was previously (and even previously it was a lot!), I am unable to take care of my daily 'maintenance' tasks such as washing etc. I haven't had the strength to write to many of those who were kind enough to send birthday gifts and cards. I haven't had the strength to go back to see my doctor or to have the remaining blood tests done. I haven't even had the strength to have a telephone conversation with my own mother for the past three weeks.

I have had to abandon thinking about anyone other than myself. I haven't been able to do any work on the projects I was hoping would benefit the M.E. community and I haven't been able to support fellow sufferers in the various groups I am a member of. I haven't had the strength to take my pills some days.

All of this isn't said to gain any pity. I think there is a larger point I want to make. Actually, there are two, maybe even three!

Firstly, the personal aspect. A lot of my sense of self worth has always been dependent on my output. On what I achieve and on what I can provide others with. I am largely a rescuer by nature - trying to intercept and fix problems. The past few weeks have taught me how damaging that is to my health. I literally have the energy supply of someone who has congestive heart failure and yet I'm beating myself up for not being more supportive of others. That can't be healthy, if you excuse the pun.

Which takes me onto the second, more general, point. For all of you reading this - whether sick or healthy - do you also need to consider whether you are looking after yourself enough? I'm guessing the answer is "yes" for most of you. Please give it some thought as health is so very valuable, I realise that now. And, even if you are sick, the current level of health you have, however low, is also to be cherished and protected. Don't let well-meaning personality traits take that health away.

And finally, the PACE trials that have managed to generate so much worldwide publicity. Why is it that the mainsteam media are able to ignore most of the scandal and the meaningful biomedical research on the subject of M.E. but are so willing to swallow the dishonesty provided by a bunch of UK psychiatrists and a study that any fool can pick apart with ease? I must admit, I lifted my head off the pillow on the day the news hit, looked around me with despair at how widely it was being reported, wrote a grouchy post on Facebook and went back to sleep. So depressing. My guess is that the only way to counter this is to win the PR war. For that is what this is, in my view. The truth has become irrelevant. Most of the world take, without question, what they hear in the mainstream media as gospel. Only by accessing that powerful influencer of the masses will we be able to fight back.

Illness and Politics

My last update delved into politics. It was a move away from my usual blogging topics.

This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.

I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, the Medical Research Council (an independent UK body that decides which research proposals will receive Government funding) made the almost unheard of decision to ring-fence £1.5m for the biomedical research priorities that the working party had identified. Note - biomedical... not Cognitive Behavioural Therapy or Graded Exercise Therapy!

The announcement was met with, on the most part, scorn by the 'community'. £1.5m isn't nearly enough - this is an empty token gesture - blah blah. Now, I know the sum involved isn't huge. But for fuck sake people, it's an almost unique scenario. Never before have I heard of the MRC giving such special treatment to specific research proposals. Change has to start somewhere and isn't always massive initially.

Then we have the two camps still bickering about whether XMRV is THE key or whether it's a load of bunkum and the fight should all be about separating M.E. from CFS. For ordinary idiots like me, I read one side of the argument and decide it makes sense. Then I read the opposing side and change my mind.

I'm ill. All I can know for sure is that I'm ill. I want to be made better. I want to be cured. In the absence of that, I want to exist in as positive an environment as possible and to provide support free from politics for others who are ill.

Why couldn't I have got a disease that wasn't so bloody political?

A Little Bit of Politics

Time for another confession. Politically, I used to be a very silly little boy. I used to delight in being contrary and reveled in shocking those around me with my right-wing solutions to all the problems of the world such as everyone having to be euthanised at 60 to create room for younger generations and bombs being dropped on the worst housing estates to wipe out poverty the easy way. I say none of this with pride. If I were faced with such an idiot today I would pity and detest him.

Probably for much the same reasons that I supported a Catholic football team when amongst a family of Masonic Protestants, I became a 'fan' of right-wing politics. I was one of the few Young Conservatives in Scotland. I saw every problem as being solvable by the free-market and by the eradication of the weak links. What a prize fool I was.

Although I'm still guilty of many foolish moments in my life, I have thankfully grown up politically. Like many others in the UK, I was intrigued by the rise of Nick Clegg and the new life that suddenly seemed to encompass the Liberals. I was so fed up of being told how to live and think by New Labour that I was looking forward to seeing what the Coalition did. I saw a future of potential freedoms that had been so eroded under the Nanny State of the late 90s and the early part of this Century.

Now I look around me in horror as savage axes are wielded in every direction. I have to acknowledge that I look at it from a new personal vantage-point as I am not currently in a position to study or earn a living. I am vulnerable. I am needy. I am dependent.

This really is not what Liberal voters signed up for. At least I hope not. What we are witnessing has long-term consequences that should make us all, whether we are currently wealthy or poor, healthy or ill, a political Blue or Red, think long and hard about where we are headed.

We must consider what sort of society we want to create and maintain. How should we treat those who suffer misfortune through ill-health, poverty or bad luck?

The targeting of the needy rather than the greedy has dire implications for what society will become. Will we return to a 'me, me, me' culture? Some might say we've never left it but everything is relative. Labour, for their many faults, tried to preserve a safety net for those who needed it.

Watching current events in Tunisia saddens me for many reasons. It is a country I have visited as a tourist and is a place full of diverse culture and history. It saddens me that so much suffering is necessary to claim basic human rights and to preserve a revolution. Mostly though, I think of how much of a dream democracy is for many of these countries. Is democracy the panacea some see it as? We live in a supposedly democratic society here in the UK. Is it serving us well? Is the will of the people being acted upon?

A debate for another time though. For now, I simply hope we are aware of what we are headed towards and are prepared for the aftermath. How David Cameron thinks he can fix 'Broken Britain' by fracturing it into even smaller pieces is a mystery to me.

The Power of Being Heard

Here in the UK, our expectations of treatment for ME/CFS are somewhat lower than some other countries. We are still routinely offered Cognitive Behavioural Therapy and/or Graded Exercise Therapy with little attention paid to physical symptoms. This, of course, angers me and the more I hear of the injustices served out to fellow sufferers the more angry I get.

Today I reflected on that sense of anger almost making me give up. I keep very up to date with all the advocacy groups and, whilst I'd never recommend burying your head in the sand and ignoring all that is wrong out there, I do wonder whether I need to spend a little less time focusing on what is wrong and more time focusing on what can be turned into positives. This update will address two areas linked to the theme.

Firstly, I visited my GP today (primary care physician, I guess they'd be called in other countries). I had, after being referred to the 'ME/CFS Centre' and not finding much of value there, almost given up on the medical fraternity and decided it was pointless dragging my exhausted body to appointments with doctors if nothing was going to be treated. However, I decided to give my GP one more try as I knew he was a guy who generally listened and took my opinions onboard.

So, I spent a large part of this week nervously preparing. I had booked a double appointment so that, in theory, I would have 30 minutes of his time. I had also booked a nurse appointment for straight after, in the optimistic hope I might get some blood tests authorised. I identified various tests that I felt should be carried out to exclude underlying infections (from parasites, bacteria or viruses) and meticulously prepared mini-speeches on why he should accept my requests.

I began by asking him to honestly share his views on ME/CFS and on what he was doing with other patients who had the illness. He was very honest about finding treating the illness frustrating (he's a man and a doctor - he likes to fix things!) and that he believes it is a physical disability of unknown origin. The poor guy must have felt like he was speed-dating me whilst I weighed up his pros and cons. I explained that I was frustrated with the diagnosis having the implications of me being beyond treatment and simply being left to manage as best I can. I then began what I thought were going to be fraught negotiations on which tests I could have. I fully expected to be told that I had received all the standard blood work and that nothing else would be done.

To my surprise, he agreed to every test I asked for! In fact, he added one I hadn't thought of. He also said he wished his medical student had been present as I was an "expert patient" who could pass on valuable learning. Whether this was empty flattery or not, I don't know, but it sure hit the spot!

Regardless of whether or not the tests throw up anything we can treat, I left feeling validated. I was heard and I was respected. Sometimes the positive outcome doesn't have to be that what is wrong is fixed. Sometimes it can be that we are simply listened to. He has said he is open to exploring different treatment options with me as long as I can back up my requests with meaningful research papers/data. This is potentially massive when considering how far behind the U.S. the U.K. currently is. There is much I can explore now, with the faith that the wisdom of people such as Dr Lapp, Dr Cheney or Dr Klimas might influence my own doctor.

So, I gave some blood for tests and I have to go back to give more (a lot more!) soon. A very productive day!

This also links in with the aims I had when setting up M.E. Community Projects. What I hope to achieve isn't based upon righting all the wrongs out there. It isn't based on anger or cynicism or negativity. It is solely focused upon those little, tangible ways of making a difference and helping others to feel supported, heard and validated.

Things are moving well in this area. I have been lucky enough to convince two very talented people to take overall responsibility for the editorial and design elements and we have already begun scoping out the first resource we will develop. If you want to get involved in some way (be it research, opinions, writing or supporting the cause in some other way) I'd love to hear from you.

The email address is: me_community_projects@live.co.uk

Here's to more of us being heard and supported :)

Time to Begin

One aspect of chronic illness that I've already touched upon is a readjustment of lifestyle that, unavoidably, leads to a readjustment in friendships. I'm no longer a part of the same circles as most of my life is now spent indoors and in bed. As is often said though, one door closes and another opens. A change that I wouldn't swap for the world is that I have formed friendships with some beautiful souls that I have come to cherish.

Due to accident or design, a great number of these new friends are Australian and a large proportion are from Brisbane. I am sure I do not need to clarify why that is significant this week. Although I am far away, geographically, from the tragedies unfolding on the other side of the world from me, I am very much closer in spirit. Much of the past couple of days has been filled with worrying about friends who are caught up in the flooding and feeling helpless.

This in turn has led me reflect on what I CAN do. Hopefully those Brisbane residents who count me as a friend feel I am providing something of use with my solidarity and concern and my donations will help the massive clean-up efforts that await the dissipation of the flood waters. But I eventually realised that there is plenty of practical value I can be doing. Not just for the Australians but for anyone who is facing a future with M.E. and is struggling to find quality information or genuine support. Yes, time to roll up the sleeves and get back to work on the project I've been talking about lately.

I've dealt with the negativity already so I won't go back to that again. Let me just say though that I totally understand not everyone will find the end result of this project something they need or want to access. That's fine. Really.

I'm opening up a 2-week 'ideas' stage from now. For those of you who are part of my Facebook circle, I will be in touch there. For those of you who aren't, it'd be really useful if I was able to include you in the updates and if you could email your thoughts on what should be included in any information produced. Think back to the early days of your illness. What do you wish you had known? What did you need that wasn't easy to find? What do you value most about the resources you currently have (practical or people-related).

The email address to use is: ME_Community_Projects@Live.co.uk

A Short Break

I've decided to take a week or two away from my previous activities. This means no blogging, no Facebooking, no developing the Heart Rate Monitor forum and no working on my previously explained 'dream'. All of these are only on hold temporarily though.

I think this break will do me good on a few levels but it's mainly in response to how my previous ideas have been received within the 'community'. I have been surprised, and dismayed, by how hostile and negative some of the private communications received have been.

I appreciate what I have set out is my vision and I don't expect others to readily buy into it. I appreciate some might think it is pointless. I also expect to do the biggest portion of the work myself. I am fine with that.

I understand that this community is made up of people who are sick and might be struggling just to keep their heads above water and that they cannot devote the time or brain power to helping out. I am fine with that too.

What I am feeling angry about is how some have taken what I consider to be a selfless act and railed against it so. It makes me question the motivations of some who are active within this community of ME/CFS patients. I am saddened that the practical attempts to provide support and information, to those who might otherwise struggle to look after themselves in the absence of medical support, has been tainted by the politics attached to this illness and the bitterness of a few individuals. I must process that and it's best done away from being so active online. I don't intend to stay angry or stay away - I just need to regain my balance so that I can continue to move forward with what I still consider a worthwhile project.

To those out there who have been helpful in providing me with constructive feedback and kind offers of help, I thank you a million times over. It is only through pure-hearted and positive action that progress is made and I look forward to working with you all in the very near future.

It's 2011......

The clock has just passed midnight here. 2010 is over and 2011 has begun.

Being Scottish, I've always felt a strong sense of obligation on New Year's Eve. It has to be best night ever, every year. We have to be drunk. Very drunk. We have to be surrounded by people. Lots of people.

I remember the last New Year's Eve that I spent alone. It was the big one. The Millennium. Year 2000 was about to become reality. I had grand plans. I was to be all kilted up and to welcome in the New Year with the girl I was seeing at the time. I had moved to England 4 years earlier and she was American but we were going traditional - spending the night at a beautiful Scottish castle.

Unfortunately, our plans never became reality. She was back in America with her family for the holidays and was involved in a serious car crash that resulted in brain damage. A few days after that, my grandmother had the first of her strokes. And so it was that I welcomed in the Millennium alone in my flat. Plenty of tears were shed and there was much sadness. The sounds of celebrations outside my window only heightened my sadness, my bitterness and my resentment of all that is optimistic about this time of year.

Now, 11 years later, I am spending another alone. It feels very different though. This is all down to choice. I am happy to be alone. In fact, the past two days of my life have been spent in a cocoon thanks to the wonder-drug that is Melatonin. A double-dose gave me the ability to sleep, almost constantly, for most of those two days. To withdraw from the world. To cease all communications. Even with myself. To quieten my hyper-active mind and just let the world turn without me. I must admit, I enjoyed it so much that I am almost loathe to return.

2010 has presented me with plenty of challenges. I got sick. I dropped out of University. I lost much of the ability to care for myself. I questioned most aspects of my self. My values. My friends. My future. And now, as I listen to the sound of fireworks and celebrations outside the window of the tiny room that has become my sick-bay and the scene of most of my days and nights, I am content. Happy to be able to avoid any sense of having to interact but knowing that it isn't rooted in sadness or depression. It is a temporary respite. A recharge. A calm and quiet that will precede my continuing battles - to get well and to help others who are battling the same illness.

Here's to 2011. I enter it a better man than I entered 2010 and a much happier man than I entered 2000. May all your futures be full of abundant hope, happiness and health.

I Have A Dream.... No, Really!

I have a dream.

This could either turn into something magnificent or die a slow death. Either way, I'm convinced it's worth trying to make it manifest.

Fairly recently, I started a Heart Rate Monitor group for those of us who saw the benefit of judging our ability levels based upon what our heart rate tells us. This has resulted in a Facebook group HERE and, more recently, a discussion forum HERE.

My aim with these groups was, and still is, to create a useful resource for the community. A place where information is centrally stored and updated to reflect the constantly changing scientific research in this area. This will continue. However, I am conscious that our heart rates cannot ever be the full picture. For some of us, they serve no useful purpose in relation to mental activity and, for others, they are considerably influenced by prescribed medications, supplements, food and water consumption etcetera.

In my view, there is merit in widening the focus. In taking a more holistic approach to our activity management/avoiding relapses/keeping our bodies as strong and healthy as they can be. This would mean incorporating an awareness of supplements/medication, diet, exercise, how different activities impact our overall health, what activities are particularly stressful for our bodies and how realistic we are about our levels of stamina.

Most of you with ME/CFS will readily be able to identify with the frustrations I experienced in the early days of my illness. Although I consider myself bright and relatively well versed in research, separating the useful information from the nonsense was a difficult task. I can only imagine how much more difficult that is for those who aren't able to scour the internet for information due to ill health or who are instantly discouraged by all the conflicting views on this illness.

This leads me to my dream. Thinking about what I would have valued most in those early days, when neither doctors nor neurologists were providing me with any information or comfort, I envisage a document that includes a collection of relevant scientific data, the collective wisdom of the trailblazing health professionals who are treating sufferers, the sage advice of long-term ME/CFS patients who have already walked the path. Most of this is already out there if you have the time to patiently pull it all together from various sources. When you are scared and sick though, how frustrating is it to have to do it from scratch?

I acknowledge that there are websites out there that already try to serve as a 'one-stop shop' for information and support. What I am suggesting is not at all a new idea. In my experience though, I cannot say I can think of a place that meets my needs in the way I think a regularly updated and streamlined resource could. What I have in mind is not a website but a PDF or similar. Something that people can dip in and out of as required, with searchable, indexed contents. Something that is comprehensive enough to satisfy those that like to voraciously research their new condition whilst remaining accessible to those that only want specific information or can only digest a small amount at a time.

What I am NOT suggesting is that I am going to create my own version of 'How to Cure ME/CFS'. If the greatest scientific and medical minds have not yet reached anywhere near a consensus on how to allow us to recover, what hope would I have? No, instead this would be more like a menu of options. It could contain the various approaches of the leading experts in the field and it could include the anecdotal opinions of the wider community. This would all be provided with the understanding that it offers only opinion/suggestions. It would not be a protocol and it would not preach any single approach.

I am fully aware this is, for the moment, blue-sky thinking. I am also very mindful of my own health limitations and that those involved would most likely have similar limitations. I really do not see that as a reason not to try though. I am already in awe of the talents of many people I have met within the ME/CFS community and I see no reason why that collective potential cannot be harnessed to produce something of lasting purpose and benefit.

Obviously, I cannot do this alone. If it is to achieve the high standards I envisage, it would be no small task. And so, rather than me writing about my feelings or my symptoms or my approach to improving my health, I have decided to write this post. Consider it a call to arms. Consider it an appeal to you all, healthy or ill. Consider it an amazing opportunity to make a real difference. To make this work, it will require the efforts of many people just like you. However little you think you can offer, I am certain we can all contribute. Whether it be a summary of what 'works' for you or a collection of research articles/website links you find invaluable or whether it be skills you have from your professional lives past or present, you can all help make it happen.

In closing, let me reassure you that I am already choosing to overcome the idea that it cannot be done. I would settle for glorious failure before defeatism any day. I do hope John Lennon was right, when he sang:

"You may say I'm a dreamer. But I'm not the only one."

The Future?

I've avoided updating the blog for the past while for a couple of reasons. One is that I haven't been having the best run of 'wellness' and I've been choosing to use my very limited energy on other things. Another reason is that I do not want to keep repeating myself with each post being a recycled version of a previous one.

This isn't always easy to achieve as so much of what I experience, think or feel now that I have a chronic illness is cyclical in nature. Here's a 'typical' week as an example of what I mean:

Monday - I'm going to change the world.

Tuesday - I can hardly change my underpants.

Wednesday - I have so much to be thankful for.

Thursday - This existence is shit.

Friday - I'm not as ill as I think. I need to give myself a push.

Saturday - I can't even make it to the bathroom.

Sunday - Another week has passed and I have achieved the square root of zero.

Hopefully that helps to paint a picture. Life is now a constantly cycling set of emotions that range from positive and thankful to what's the telephone number for Dignitas (that might not make any sense to non-European readers but Google is your friend). And so, although whatever I'm feeling/experiencing on any given day is real and worth acknowledging, I also am aware it is exceptionally transient.

Which brings me on to the main theme of this post and another area that is shifting constantly in my mind. The future.

Almost every area of my life is now up for re-negotiation. There are many ways in which the future might look for me, depending on my health. I could be relatively symptom-free next year, I could be worse (perish the thought) or I could be relatively unchanged. The main areas of anyone's life, in my view are: relationships, career, social life, sense of purpose. All of those areas are impacted by my health. There's a lot of tough thinking ahead of me.

One thing I am becoming more resigned to is that the change in career direction I had mapped out (to become a Social Worker) is unlikely to be appropriate now, regardless of whether I improve or not. Social work, especially in the UK, is a career that is often dominated by high levels of stress, low levels of support from the public/Government and crazily unrealistic targets and workloads. I was always aware of this and it didn't phase me. Now though, I know that my health will likely be unable to handle such stressors and I'd be back to being very ill within a couple of years of recovering.

Another consideration is that I am now fully engaged with M.E. - both in terms of how it is impacting me personally and the stories I hear from fellow sufferers. To be honest, I never gave M.E. a second thought until it hit me. I knew it had controversy attached to it and I even knew a woman who apparently had it. But, like so many of us whilst we are healthy, I shrugged my shoulders, said 'what a shame' and carried on with my life. So, now that I have this new perspective, I'm going to find it very difficult to treat any future recovery as an opportunity to turn my attention/skills/efforts to anything other than somehow supporting those who are in the middle of suffering, despair and hopelessness.

I'm arrogant enough to know that I have a good brain (perhaps less so than before I got M.E. as it has eaten away at some of the sharpness!) and that, whatever I do with my life in the future, I can have an impact. It would seem absurd for me to direct myself anywhere other than M.E. in the future. That has implications in terms of my career options, my earning potential and where I live/work. Everything changes and I may look back on this post in years to come and laugh at my naivety but, for now, I can't envisage using any future recovery to do any other type of work.

The other main factors I mentioned? Who knows? All I can know at the minute is that I am not the same person I was before I got ill and I will probably not possess my old values, concerns or priorities when I come out the other side of this.

Here's to the future my friends :)

Dark Nights of the Soul

I must confess, the main purpose of this post is to try to help me make sense of what I'm feeling right now (4am here!) and to process some stuff that seems to be stopping me from gracefully accepting my current circumstances. That said, I hope this post is helpful to others out there who go through similar dark nights where hope feels like it has gone and where the isolation and frustration overwhelms. Also, perhaps it will serve some purpose to those of you who live with, love or know someone with a chronic illness. An insight into that type of life.

I'm told I'm doing very well for someone so new to chronic illness. That I'm moving quickly through the various uncomfortable phases of having to adjust to a new life. To be honest though, I think exactly the opposite. The people I think are doing well are the ones who have managed to survive this existence for so long. It's simply beyond my comprehension how anyone can live this life long-term. I have massive respect for their perseverence and determination.

Tonight is one of those nights where I can find no peace within myself. I can't see past how isolated, lonely and sad I am. How I am living in what almost feels more like a tomb than a home now. I have people who love me and care for me and I am always so thankful for those people. But, even those who are closest to my heart cannot join me in this. Life goes on around me and it can't all stop just because I am no longer able to take part in it. The irony is, given the choice previously, choosing my own company would always be pretty high up the list of preferences. There was always plenty I could occupy my mind with and I never grew bored of myself. Now being alone has become default rather than choice, it kinda stinks.

Thinking about the future is very frightening. If I am sat in the same place, thinking the same thoughts, a year from now - I'm not sure it's a future I want. I don't yet know what has to change (and I acknowledge I am limited by many factors in terms of what I can change) but the status quo cannot be an option for me. How do I manage to keep a relationship together when our daily existences are already so far apart and when I now have so little to offer? How many visitors will I get in 2011? Probably not many. How old will my nephew be before I can be well enough to enjoy some time with him?

The only people I feel connected to right now are others with chronic illnesses. I'm so blessed to have 'met' some amazing people who are fighting similar battles but they are scattered all over the world and I cannot even make it to the end of my street. In a way, it's a further twist of the knife. There are people out there who I can feel accepted by and who are content to just sit with me in my pain but no amount of emails or virtual chats can equate to the physical presence of someone just 'being there'.

And so, for any readers out there who have a loved one in a similar position to me, my advice would be... just be with them. Give them your support, silently if need be, and your full attention. Make them feel less alone in the world. Forget the urge to distract yourself with TV or chores. Just experience their reality with them for a while. I guarantee it will mean the world to them.

This would usually be the point where I would read what I have written and either delete it or apologise for sounding so sorry for myself. I'm not going to do that this time though. Censoring my feelings to protect others cannot be maintained all the time. I'm hurting, i'm lonely, i'm angry, i'm resentful, i'm feeling sorry for myself, i'm hating the concept of fate and i'm afraid for the future. That is my truth tonight.